Henrietta Lacks

Without Roland Anthony Pattillo, the story of Henrietta Lacks may never have been told.

Dr. Pattillo grew up in Louisiana in the 1930s in an entrenched culture of segregation, yet he nurtured the improbable dream to young men of color in the Deep South at that time of one day becoming a doctor. Despite the odds, however, young Roland earned his medical degree from the Saint Louis University School of Medicine in 1959 and embarked upon the career he had dreamed about since childhood. After medical school, Dr. Pattillo completed his fellowship training at Johns Hopkins University School of Medicine and Harvard Medical School. At Johns Hopkins, Dr. Pattillo trained with George Gey, MD, who in 1951 cultured the first immortalized cell line from a tissue sample biopsied during the treatment of Henrietta Lacks, a cervical cancer patient – although the culture was created without her permission. This story is chronicled in the best-selling book and recent film, The Immortal Life of Henrietta Lacks.

The immortal cells – the oldest and most commonly used human cell line (known as HeLa cells), have contributed to invaluable scientific progress in many fields, notably testing the first polio vaccine in the 1950s to expedite its readiness for human clinical trials. As a physician-scientist, Dr. Pattillo led the team responsible for developing a new cell line from cervical tissue that was used to develop a vaccine for the Human Papilloma Virus, which is routinely used to prevent the cervical cancer that claimed the life of Henrietta Lacks. Beyond the clinic and the laboratory, Dr. Pattillo befriended the Lacks family when he learned that they were unaware of the important scientific advances being made using HeLa cells. Due to his close interactions with the family, their questions and grief remained with him over the decades and continued to play a part in his 35-year career at MCW and 20-year career at Morehouse School of Medicine in Atlanta. Underscoring his relationship with the Lacks family was Dr. Pattillo’s gift of the headstone that now adorns Henrietta’s previously unmarked grave. He also works as a liaison between the Lacks family and the scientific and journalistic communities, including, most notably, Rebecca Skloot, the author of The Immortal Life of Henrietta Lacks. In addition, Dr. Pattillo has honored Henrietta’s legacy for the past 22 years by hosting an annual HeLa Women’s Health Symposium to educate participants on health equity, cancer prevention and other timely issues within the field of women’s health. Dr. Pattillo retired as a practicing physician in 2013 but continues to conduct research in his lab at Morehouse School of Medicine. He has authored more than 100 peer-reviewed publications, as well as a book and numerous book chapters. His contributions to science and medicine have been recognized by many prestigious awards, including the National Institutes of Health’s Pioneer Award.The Medical College of Wisconsin (MCW) is pleased to highlight Dr. Pattillo as the first in a series honoring individuals who have made distinguished contributions to improve health in our communities. Together, we honor the past as we advance the future.

This article was originally posted By SALAMISHAH TILLET (NYTimes) APRIL 12, 2017

Rebecca Skloot’s “The Immortal Life of Henrietta Lacks” was a publishing and scientific sensation earlier this decade that spent 75 weeks on the New York Times paperback nonfiction best-seller list. The book told the story of an African-American woman named Henrietta Lacks whose “immortal” cell line, known as HeLa, came from her cervical cancer cells in 1951. Ms. Skloot, as both narrator and author, traced the afterlife of these cells: HeLa emerged as one of the most widely used lines in medical research and helped establish the multibillion-dollar vaccine industry, cancer treatment and in vitro fertilization industry. This was all done without the knowledge of, consent from or any compensation paid to Lacks’s family as it struggled with racism and poverty in Baltimore.

The movie adaptation, which debuts on HBO on April 22, takes a different storytelling approach, focusing on the lives of Lacks’s children, particularly her daughter Deborah, played by Oprah Winfrey. George C. Wolfe, the movie’s director and co-writer, said that he shifted the point of view away from Ms. Skloot (Rose Byrne) to Deborah because he found her to be “a ferociously smart and incredibly creative, brave and daring” woman whose loss put her on a “journey to know her mother in essence to know herself.” He continued, “That felt to me very profoundly intimate and the emotional propulsion necessary to drive a film and have strong enough muscle to hang everything else that developed.”

In a phone interview, Ms. Winfrey, 63, who was also an executive producer on the project, talked about the book’s resonance, her reluctant decision to star in the movie and why sharing the stories of women, particularly of African-American women, has become her life’s work. These are edited excerpts from the conversation.

When did you first learn about the story of Henrietta Lacks?

I only learned about it after reading the book in 2010. And I said let’s get the rights. I wanted to tell the story because I lived and worked in Baltimore as a young reporter for eight years, and I never in all those years of reporting, of being involved in the community, going to church every single Sunday at Bethel A.M.E., never once heard the name Henrietta Lacks. So I thought when I read the book, “Wow, if I don’t know this story, I’m sure that there are many many other people who also don’t know.”

What was the appeal of starring in this film as Henrietta’s daughter Deborah?

I had noooo desire to act in this film. None. Len Amato [president of HBO Films] came to visit me and said, “I think it should be you.” I gave him some other names of people who I thought it should be, and he said, “No, we really prefer you.” So, it was only after George came on board, and George said definitely you should do it. I’d been talking to George for two years about doing a play on Broadway, and neither of those plays, one with Audra McDonald, have come to fruition. Audra said, “It will change your life and change you as an actress to work with George.” And she’s right. He was the person who was able to take a script that felt overridden by the science and re-adapt that into a story about a woman in search of her identity through her mother. That’s why it happened.

I read that you said you didn’t want to embarrass yourself?

I was so intimidated by my very first film that I cried every night. I thought I was going to get fired every day on “The Color Purple.” The other day, I was on set with Reese [Witherspoon], and I just happened to ask her how many movies she’s been in, and it’s over a 100. And I was thinking, “God, I hope she doesn’t ask me, because I think it’s been five.” [She has actually starred in seven.] It’s not the primary thing I’ve done. I think I get better every time I do it, but I haven’t spent years fine tuning and working on it. It’s completely out of my comfort zone. So, I’m a bit intimidated when I walk on a set. I always think everybody knows more than I do and has done it longer than I have, which is true.

One of the important themes of your work, from “The Color Purple” to “The Immortal Life,” is the sexual violence experienced by girls and young women. Why do you tell those stories?

I get to say, through the dramatic interpretation of these stories, what I tried to say [on “The Oprah Winfrey Show”] in 135 episodes of stories with child molesters, victims of child abuse, talking to the molesters themselves. I tried and tried to make an impression on the consciousness of America about what sexual abuse looked like and its long-term effects. At the end of the show, it was the one thing I said I thought I failed at. That I couldn’t get people to see it wasn’t about the act, it was about the way we consciously accepted it. So then I decided, let me try to dramatize it, and then maybe you can see it.

How do the book and movie address another trauma of Henrietta’s legacy — that her cells were so instrumental to science, but she was virtually invisible in American history?

I live to tell stories that touch on what it means to be a black woman in the world, so I still feel it’s a miracle that we know it was an African-American woman who contributed all this to the medical field and we wouldn’t even know the story without Rebecca Skloot. I get really upset when I hear people complain [namely some members of the Lacks family] that Rebecca, or I or HBO, haven’t done anything. When one of the sons started a Henrietta Lacks Healing Center, I did make a six-figure donation to it. And we offered them to be consultants on the film, but a small portion of the family didn’t want to be a part of it. So I don’t know what they wanted other than the $10 million they wrote me asking for.

I don’t feel it’s my responsibility to now fulfill the role of the drug companies that have made billions off the cells. Do I think that her family should have benefited from that? Yes, I do. Do I think it’s my job or HBO’s job to make sure that happens? No, it’s our job to tell the story with as much integrity as possible.

In the book “Fatal Invention: How Science, Politics, and Big Business Re-create Race in the Twenty-First Century,” the sociologist Dorothy Roberts says that the story of Henrietta Lacks ultimately challenges the view that African-Americans were inherently inferior because her cells “although they came from a black woman, helped to improve the lives of people the world over and testify to our common humanity.” How could she die in a segregated ward and yet have her cells travel the world over?

How can you have Dorothy Dandridge come and sing at your club, and then she can’t use the bathroom and find a hotel? We certainly want to be entertained by you and appreciate you and make ourselves feel good from the experience of your art. But nope, can’t sit down, can’t eat. In 1951, all the people that benefited from those cells didn’t know that it was a black woman’s cells. It’s indicative of the times. This is the thing I choose to focus on. I’m obviously aware of and understand the complications of that. But look at what’s happened. I sit here my black self, with George Wolfe, and with the ability to get this film made. That’s progress.

A version of this article appears in print on April 16, 2017, on Page AR22 of the New York edition with the headline: The Things She Handed Down

Sep 11, 2015 — I was surprised, but not shocked to discover the article attached to this update. Demanding a book be banned because of a sentence’s-worth of descriptive prose? Sounds like old-fashioned censorship to me. Fortunately, this Tennessee mother has unintentionally given Henrietta some new exposure. Let’s take advantage of this: share the article and the link to the petition with everyone you know. Henrietta’s story should eclipse anyone’s small-mindedness. Thanks, and let’s keep going!

Henrietta Lacks was a black tobacco farmer from Roanoke, Virginia who died of an aggressive form of cervical cancer in 1951. Unbeknownst to her, doctors removed cell tissue from her body during treatment then cultured and shared them with fellow researchers after her death. These cells were the basis of the immortal ‘HeLa’ line, which was used by Jonas Salk to develop the polio vaccine, NASA to observe human cell behavior in zero gravity, and in the creation of many of the drugs and medicines taken for granted today. HeLa remains a foundation for other landmark scientific discoveries, not excluding breakthroughs in cancer, AIDS, and genetics research.

The book “The Immortal Life of Henrietta Lacks”, authored by Rebecca Skloot, a top ten book-seller for over three years, told the story of the Henrietta Lacks, a 31 year old woman who died from cervical cancer, with only nine months between her initial diagnosis and her demise.

Born in Roanoke, Virginia, August l, 1920 and raised in Clover, Virginia, this wife, mother and new citizen of Turner Station, Maryland, moved, with her family, to find employment at Bethlehem Steel Companies, that employed over 38,000 people during that industrial period.Henrietta Lacks, typified women of her time.

She loved, attended church, helped others coming to Maryland from the South for employment opportunities and dreamed the dreams of women her age.She loved to dance, play cards, and help her family by cooking delicious meals.Those who knew her say “ she was a giver”.So many are not surprised that her cells now continue to give to so many, yet today.

Mrs. Lacks was first seen by Dr. William Wade, one of the doctors of Turner Station, Maryland, five months after the birth of her fifth child, Zakariyya.When Dr. Wade could not halt the bleeding, he referred Henrietta to Johns Hopkins’ Gynecology Department.It was there that Dr. Howard Jones took a biopsy and told her she had cancer.

Over the months, the standard of care, for that time, was administered but her cells, taken without her knowledge, continued to proliferate instead of dying.After a very painful eight months, Henrietta died on October 4, 1951 and was buried in an unmarked grave.A grave that was ultimately marked in May, 2010 with funds donated by Dr. Roland A. Pattillo, who worked under Dr. George Guy, at Johns Hopkins Medical School.Dr. Gey, who had been working to find live cells lines that could be used to test, develop and create pharmaceuticals to address the scourge of polio that was crippling the nation, including President Franklin D. Roosevelt.

Trillions of Henrietta Lacks cells were grown and promulgated at the Tuskegee Institute, in Tuskegee, Alabama, at the same time that the Department of Public Health was also funding the testing of Black men, alleging to find cures for syphilis and gonorrhea. These cells were said to have come from a woman by the name of Helen Lane, not Henrietta Lacks, as the family would later learn.

For many years, it was not known that Henrietta’s cells had been harvested, nor that she was the donor of HELA cells.Over twenty years, after her death, when the family was approached for various science/research projects, and lawyers began to propose money-making opportunities, that never materialized, did the family learn about their Mother’s cells.

While it was known that penicillin was a cure for syphilis, men continued to come to Tuskegee where they were guaranteed meals and free health care, during the Great Depression.At the same time, the Lacks Family was in the throes of their loss and deeply affected by the maladies associated with lack of funds.Ultimately, several family members agreed to care for the Lacks children.The after-effects of such a travesty certainly affected the family’s economic, educational and social opportunities.Multiple abuses were remembered by the children, these scars inflicted indelible wounds.

The oldest son, Lawrence and his wife, Bobbette, attempted, to the best of their ability, to keep the family together.To their credit, they always remained a committed, loving, family, who worked to better themselves and uplift the whole, as they continue to do today.

Many approaches to the Lacks family, over the years, never led to full-understanding of what HELA cells were, nor any compensations for the trillions of dollars earned by world-wide pharmaceuticals that provided cures and better lives for many.These discoveries and cures continued to allude the Lacks family.And today, many need new discoveries to improve their quality of life.Cancer, stroke, diabetes are maladies that have affected several family members.

Deborah, second daughter of Henrietta Lacks, whose only sister, Elsie, died after years of institutionalization for epilepsy, shortly after Henrietta’s death, continued to ask about her Mother.Throughout the years, Deborah was the persistent, consistent advocate that sought more information, more hospital records and expressed her feelings of deep loss as a teen, as a young Mother, and certainly as a mid-lifer, with many illnesses, herself.

Regrettably, Deborah did not live to see the book published, nor has she heard the many accolades we all wish to give her, for she passed in May 2009, after years of battling high blood pressure and acute diabetes.We honor Deborah, for without her there would have never been “The Immortal Life of Henrietta Lacks”.

Dr. Roland Pattillo, in the interim, had begun the annual symposium on women’s health at the Morehouse School of Medicine, in 1996.Named in the honor of Henrietta Lacks, whose cells he had first worked with in his undergraduate chemistry class at Xavier University, in New Orleans.Dr. Pattillo had witnessed the affects of hydroxy urea on HELA cells, while working, with his professor, for a cure for cancer.

He also knew that the cells had come from Henrietta Lacks, a Black woman, often un-named, in the past.So when the opportunity came to work on HELA cells, at Johns Hopkins, as a Fellow under Dr. Gey, Dr. Pattillo worked aggressively on other things the HELA cells could do in discovering cures for cancer, while learning more about the Trophoblast and stem-cell identification.His cell lines continue to be used and are one of two lines used in testing for the Gardasil inoculation that prevents cervical cancer today.

Dr. Pattillo continued to challenge science and the use of the HELA Cells, and in1996, invited the Lacks Family to the first HELA Conference held for the Morehouse School of Medicine at Morehouse College’sDr. King Chapel.David Lacks, Sr., Deborah, Sonny and other members of the family were honored by the City of Atlanta.This proclamation of Henrietta Lacks Day in Atlanta represented the first official introduction of the Henrietta Lacks family.

The report of the 1996 HELA Conference in the American Journal of Obstetrics and Gynecology was read by Rebecca Skloot a scientific writer who had heard of Henrietta Lacks in her biology classes as a young college student.Enthralled by the story of the cells and bolstered by the knowledge that this story had never been told, she reached out to Dr. Roland Pattillo.Dr. Pattillo, after much scrutiny, determined that Rebecca was sincere about telling the true story.The rest of it is history, as the book, “The Immortal Life of Henrietta Lacks” remained in the top ten book category for over three years. It has been translated throughout the world, read by millions, and has become the impetus for many discussions, additional scientific, scholastic, bio-ethic symposiums and speaking engagements plus opportunities to relate to inquiries about the needs of the Lacks family.

Johns Hopkins School of Medicine, under the leadership of Dr. Daniel E. Ford, Vice Dean for Investigation and Director of Johns Hopkins Institute for Clinical and Translational Research, began a scientific, scholastic, community and family initiative four years ago on the Johns Hopkins campus.Noted speakers have been at the forefront of addressing the major health concerns from the community, particularly East Baltimore where community-based organizations, schools, including a partnership with the Paul Lawrence Dunbar High School, where two $ 15,000 scholarships have now been awarded, and the hospital community comprised of employees of Johns Hopkins are very supportive.

The name, image and significance of Henrietta Lacks are no longer an anomaly.Few have not read the book, or watched television shows about the family.And soon there will be the movie about Henrietta Lacks’ life, that has been scripted and will be ultimately casted for view on HBO, with underwriting supporters, including Oprah Winfrey.

This year’s, Johns Hopkins HELA Memorial keynote speaker was Dr. Gary H. Gibbons, Director of the National Heart, Lung and Blood Institute, NHLBI, who oversees a staff of over 900 scientists working to cure, sustain and improve the quality of life of those affected by heart, lung and blood diseases.Dr. Gibbons was full Professor and Director of the Heart Institute at Morehouse School of Medicine, after stints at Stanford University in California and Harvard School of Medicine.He is an outstanding, creative scientist, himself, respected highly for his leadership in the American Heart Association.

Dr. Gibbons quickly identified with the Lacks Family and the need to ensure that they are always remembered and honored for their gift of life to so many.Over 70,000 papers have been chronicled and presented using HELA cells.Thousands of pharmaceuticals have begun their initial tests and slides with HELA cells.

It is said that if they were connected, HELA cells would go around the world multiple times and be one hundred times taller than the Empire State Building .They have traveled to the moon to study the affects of zero-gravity as a precursor of space travel and resultant cellular affects. Yet, the Lacks Family has never been monetarily rewarded for this magnanimous gift to science.

The family were introduced to the cells, their proliferation, and their significance to science through the Johns Hopkins symposiums; and annually they learn more as they now transfer their knowledge to additional memorials that honor their Mother, grandmother, great grandmother and aunt.

Some of the family are now speaking about memories, also sharing the new things coming to the family by way of opportunities, yet their health challenges and desires to continue to grow, while helping others, remains a challenge .

The maladies that disproportionately affect the African American community certainly have not escaped the Lacks family.Bobbette, the wife of Lawrence Lacks, the oldest son, suffered an acute stroke in January 2012 and continues to require daily home nursing care.

“Sonny”, David Lacks, suffered a stroke in June of 2013, after going to many colleges and universities to share how the family continues to remain focused and united in honoring their Mother’s legacy of giving.His hospital bills are in the hundreds of thousands of dollars and now unable to work, his expenses remain a legitimate personal concern.

Zakariyya’, the youngest’s, knees are so bad that he now is cared for in a senior-assisted living complex.Hopefully, the Affordable Healthcare Act will help to address these medical and economic challenges.

More universities are making the life of Henrietta Lacks required reading and the second, third and fourth generations are making education, increased exposure and augmented involvement in all future Henrietta Lacks activities a requirement for the use of her name and image.The unification of the Henrietta Lacks legacy justifiably warrants involvement of the family.

Recently, with help from Johns Hopkins, the family, forged an agreement for the utilization of Henrietta Lacks’ genome.Concerned about what this knowledge might mean to descendants of HELA, they agreed, in writing, to permit her genome to be used but it requires approval of a formal committee, comprised of Lacks Family members, scientists from Johns Hopkins and the community, that will determine which scientists and which projects would be permitted usage.

The Henrietta Lacks Legacy Committee, led by tenured advocate Courtney Speed, of Turner Station, where the Henrietta and her family resided before her death, held a plaque ceremony at the New Pittsburgh Avenue address, Saturday, October 7, 2013.Over 200 people witnessed the unveiling, including the Lacks Family, Mrs. Speed, her Board and residents from the community, including Dr. William Wade, Jr., plus Dr. Roland A. Pattillo, from the Morehouse School of Medicine and Dr. Daniel Ford, from Johns Hopkins Medical School.

The Lacks Family Foundation is available at www.helafoundation.org where your donations support other families affected with major health issues, and provide employment and training opportunities.Administered by the Lacks Family, the foundation made its first grant to a Baltimore group that supports outreach and workshops for prostate and breast cancer patients.Called Time 4 the 99, the organization’s goals are prevention and reducing the disparities in African American diagnosis and care.

“HELA FAMILY STORIES”, with memoirs from Lawrence and Bobbette Lacks, is available exclusively at Amazon.com.It captures the memories of the children and its affects on their lives and thoughts, as shared by the oldest brother and his wife, who became surrogate parents for this young family, after Henrietta’s death, 62 years ago.

Dr. Roland Pattillo, along with a group of scientists, HELA family members and residents of Virginia are working to actuate CRIL-HELA, the Committee to Recognize the Immortal Life of Henrietta Lacks.The dilapidated cabin, where Henrietta was raised, before coming to Turner Station, Maryland, remains in Clover, and many believe this should be a national historic site, with national recognition and designation.Additionally, Morehouse School of Medicine continues to lead by honoring HELA during their annual symposium, in September,while working to further refine the CRIL-HELA mission.

If you have not read the book….you must…for it is an engaging discourse on the lives of people of a different era yet so impacting on our lives today.“The Immortal Life of Henrietta Lacks “ illuminates the challenges of a woman whose cells continue to give so much to testing, trials, and future discoveries.We know who Henrietta Lacks is….she is a heroine.Thank you Henrietta!